female only Pancreas problems and female issues- Ladies-please?

Doinitformykids · June 22, 2007

Hi all. This may be kind of long, so please bear with me.

13 years ago, due to a nasty divorce, I went on a diet of coffee and Water, and lost somewhere around 100 lbs in a little over 3 months. At that time, I started having major chest pain every time I had my period-to the point where I needed to be hospitalized every month for 4 days. I was throwing up bile and in so much pain every month-it was what I imagine a heart attack would feel like. They did extensive testing on me, and figured out that it was some kind of combination of endometriosis coupled with a strange form of pancreatitis. They decided there was some kind of pancreatitis involved, because during 2 different hospital stays, my amylase levels were way way up, and any surgeries that were consequently done triggered off attacks as bad as the ones I got with my period. They went in looking for the endometriosis, but never found it-although they told me that although they couldnt find it that didnt mean it wasnt there. I should also mention that until then, and after that I was never able to get pregnant, and we did end up adopting 2 beautiful children. I begged my dr to do a full hysterectomy, but he refused because they werent exactly sure what was causing the problem, so therefore they couldnt be sure that would stop it. I should mention that during this time, since they were testing for all kinds of things, they found I had a huge amount of gallstones, and they did a laparoscopy to remove my gall bladder. The surgery went well, however I did have an attack that lasted 4 days after, and the only thing that helped with the pain at that point was shots of dilaudid-(a form of heroin usually only given to cancer patients in their last days....

The doctor finally did put me on Lupron shots to stop my period, and I took them every month for over 5 years. The attacks all stopped, and I havent had a problem since. He did stop the shots 6 months ago, and although I have my period again-very irregularly, very heavy-I havent had an attack-thank goodness.

Now, with all the reading I have been doing, I see that one side affect that is listed in the side affects that happen in less then 1% is pancreatitis. I also see that they wont put the lap band in someone who has chronic pancreatitis. Now I should mention that many pancreas problems are due to drinking excessive amounts of alcohol-which I dont do-not now nor ever. Other then maybe a glass of champagne on new years and a beer or 2 in the course of a whole year, I dont touch the stuff.

The doctors never felt this was chronic pancreatitis-but they believed that endometriosis may be attached to the pancreas somewhere in my system which is extremely unusual.

I guess my question is twofold. I have about 200 lbs to lose, and although I havent had an attack in over 4 years, of course I am scared to death that it will start again-I really cant even describe the kind of pain that was for me....My health is severely deteriorating due to the extra weight. I cant walk far because of my legs, my ankles are always swollen, I wake up short of breath very often, and I am out of breath from walking across the street. I really dont know how long my body can take all these extra pounds, and I have a 4 and a 5 year old to be here for.

I am wondering if anyone here has had their pancreas affected by the band at all, and how it happened...If the surgeon is willing to do the lap band surgery, can anyone familiar with pancreas problems give me any suggestions as to what the dr could do to avoid it? Do you think the type of meds they use to put me under could also have something to do with the problems I have had? I know no one here is a dr, I am just wondering if anyone else has had any kind of experience with this sort of thing. I have been reading alot on alot of different message boards, and I havent seen anyone mention anything about it....:help:

If youve gotten this far in my messy story, thanks for reading-and thanks to anyone who can offer me any insight. I do have an appointment in early July to start the ball rolling...I know the dr will have his own opinions....I guess I just want to know what others think as well...

~Dawn

cyndilou29 · June 22, 2007

Wow, that's a tough one. If they believe your endometriosis is that severe, have they considered a hysterectomy? That doesn't mean the endo won't come back but it wouldn't hurt.

I would just talk to your surgeon. They would know much more than I would or most people here. It is a very unique situation you are in. However, if your doctor doesn't think you have chronic pancreatitis then it is not a contraindication. I had severe endometriosis and it attached to many of my organs as well, including my liver. It's fairly common in severe endometriosis. I had a hysterectomy and never had a problem again. The Lupron worked for a while but when I came off it started again after a year or so. I'm fairly young and didn't want to live with that for 20 more years (until menopause) so I decided to take it out.

In any case, talk to the doc that treated you and your surgeon. They'll figure it out.

Good luck and keep us posted

sizewize · June 22, 2007

I have no medical advise to offer whatsoever but just wanted to tell you how sorry I am for all the troubles you're having and I hope all goes well for you.

I was banded two years ago but have only lost 60 lbs. because I was just diagnosed with something called PCOS and that causes weight gain or inability to lose. My weight is all in my stomach and I hardly eat but gain nevertheless.

If anyone with PCOS could advise me I'd be appreciative. Good luck to you.

Doinitformykids · June 22, 2007

Cyndi-I had wanted a hysterectomy, but the gyn that was taking care of me wouldnt do it. Unfortunately, I had seen so many drs with this problem because it was so unusual-most of them walked away from the situation after putting in their 2 cents, sending me for tests without the results they expected-my gyn was the only one who stuck it out until he gave the lupron a shot and it worked....I didnt ewant to go to another dr for another opinion regarding the hysterectomy at that point. Now that I have been off the lupron for about 6 months without an attack I haven't seen him. In the 5 years or so that I was on the shot, we moved to another state, and in order to keep getting the shot, we drove about 400 miles roundtrip. It became very difficult, so when he took me off the shot, I didnt continue to see him. At this point, Im thinking I would be much better off taking off a bunch of weight before going for hysterectomy, although I will do anything the dr wants me to do.

Sizewize-So sorry about the PCOS. But 60 lbs is wonderful! It may be a little slow, but think about what you may have gained had you not had the surgery when you did...I hope someone has some information to help you. Maybe the weight loss will make it easier for the treatment as well!